Thursday 20th January
The day starts quietly enough with Joseph trotting happily off to school. His teacher is back today after a short training course. According to Joseph she’s been learning how to make children better if they hurt themselves. Hopefully his theory that she’s had to injure herself repeatedly to do this is way off the mark. After a few quick phone calls regarding our finances, I’m off to London. There are no staff at Bickley station and no ticket machines either, so I have to buy my Travelcard when I arrive at Kings Cross which seems to take forever. Josh’s curtains are drawn which usually means he’s sitting on the commode, but when I open his door I’m in for a shock. He’s lying next to Claire on the bed looking pale and weak and crying out in pain while she gently rubs his tummy. It all kicked off very suddenly this morning with severe pain and vomiting and he’s already had an x-ray done on his abdomen to start ruling things out. There’s a nurse and a doctor here from Tadworth today and they’re getting to see, first-hand, just how unpredictable Josh’s health can be. Claire hardly has time to fill me in on all the details before she’s whisked away to a meeting to discuss his transition to Tadworth. I was due to cover this tomorrow, but it’s been brought forward as the head nurse had to change her plans due to illness. While Claire discusses all the ins and outs of the move, I’m left to rub Joshie’s tummy to try and ease the pain. He’s already had Paracetamol, Buscapan and Codeine but they’ve had little or no effect. Another x-ray is needed but thankfully it’s done in the room and Josh gets through it without too much discomfort. He manages a quick catnap before the pain starts to build up again. Once it does we’re back in familiar territory and at one point Josh is standing by the bed with me kneeling beside him as he pushes down on me and tries to open his bowels. In an effort to take his mind off things I reel off a series of football facts I read in the paper today, the most memorable of which is that Barcelona are the shortest team in Europe with an average height of 5 foot 9 inches. Surely they’ve gone metric in Spain ? Claire manages to organise cover for Joseph so she can stay a little longer but we don’t get to spend any of it together as Josh continues to struggle and is screaming in pain. The general feeling is that it’s Pancreatitis again and it certainly fits the bill. We request a pain specialist which is an odd name for them as it sounds like they dish out pain rather than relieve it, like the Spanish Inquisition or something. They recommend morphine and ketamine, but we really don’t want to go down that route. Morphine makes it difficult to differentiate side effects from neurological problems and the two together are more than likely why Josh ended up in PICU last year. We settle on Fentanyl, a morphine substitute that’s more potent but stays in his system for far less time. It takes a couple of hours before it’s set up by which time he’s desperate. There’s a strange rule that dictates either nurses or patients can press the button to release the medication – but not both. This is to prevent over sedation. I’m not allowed near it for reasons I’ll go into when I’ve got more energy. We opt for the ‘nurses only’ ruling as Josh is in so much pain he wouldn’t be able to find the button let alone press it at the moment. Nice Dr Robert waltzes in an hour later with some good news from Vienna. The blood sample they sent off to see if his immune system can battle the JC virus would appear to suggest that he can. It’s groundbreaking work which means they only have a small data base to work with and they can only compare his response to that of HIV patients as the virus, which we all have, is only activated when the immune system is severely compromised for a long period. I can’t explain what the exact measurements are of, but in HIV patients who didn’t survive JC, the response to the virus was zero. In HIV patients who recovered from the virus, the response was 10. And in Josh’s case it was 30. Basically this suggests the memory T-cells in his new immune system recognise JC and home in on it. It’s as good a result as we could possibly ask for. Another of Josh’s key workers from Tadworth has been in all day today and she appears to be fine and very thorough. If there’s any criticism it’s only that she’s been trying too hard to impress, which is perfectly understandable, but begins to grate after a while. At one point she keeps asking Josh to high five her, even though he’s in pain and trying desperately to sleep. I point out, as kindly as possible, that I wouldn’t high five her either under the circumstances. When she leaves, Josh turns to me and says ‘ She’s a bit annoying, Dad.’ He’s not wrong and some of the nurses here have come to the same conclusion. I suspect she’ll be fine once she’s on her own turf. He’s meant to be nil by mouth, but as the day wears on he becomes thirstier and thirstier. This was the case last time he had Pancreatitis. He’s vomiting every 30 minutes or so too, which is another symptom. I request a bag to attach to his peg, so he can drink water like it’s going out of fashion without it going past his stomach or irritating his pancreas. Every hour or so I remove the bag and empty it out into a bowl which I’ve marked ‘Aspirate.’ My handwriting isn’t great and it looks more like it says ‘ A pirate’ which several of the nurses find a little baffling. We’re still giving him most of his oral meds through his peg, but that may change tomorrow if he doesn’t improve. It would be a shame as they’d only just been switched over from IVs in readiness for Tadworth. Josh is relatively pain free by 8pm but finds it difficult to get comfy and drifts in and out of sleep throughout the night. I don’t even bother trying and watch Season 3 of the Inbetweeners instead. I read in the paper today that the stars are currently touring Britain for charity and visiting real places with rude names. Cock Street, Minge Lane, Swallow Drive, Lickey End and North Piddle are all on their list. I’d better look out for them next time Joseph and I go to Beaver World...
Friday 21st January
Josh wakes at 9am relatively pain free and is showing no side effects from the Fentanyl. He’s bright and articulate but asleep again after an hour. A Gastro doctor calls in and she has an interesting theory when I ask her why he keeps developing Pancreatitis. Claire and I had wondered if it could have been triggered by feed, as his last two attacks have coincided with the start of Elemental feed and solid food. Apparently not as only excessively fatty foods or alcohol would do this and I haven’t found any Lard wrappers or empty Smirnoff bottles in Josh’s bed lately. She thinks it could be a blockage due to the fat content in the lipids of his TPN and this is something they will look to investigate over the next few days. Fingers crossed they’re right on this as it’s easily addressed. Josh spends the vast majority of the day asleep and misses physio and school, which means I don’t leave the room all day. Luckily I have an uneaten sandwich from Pret at the back of the wardrobe, so I don’t starve. I weigh him when he wakes up and he’s put on nearly 3 kilos, which explains why his eyes are looking swollen and puffy. Think Gordon Ramsey post-plastic surgery and you won’t be far wrong.This is most likely due to high blood pressure and excess fluids. Ward round happens late and brings no new news. Everybody sees this latest episode as a blip and hopefully he will be back to normal by Monday. In the meantime, his less important oral meds have been suspended. Claire and I finally catch up on yesterday’s Tadworth meeting and the biggest surprise is that they don’t deal with any blood products there, which means a trip to Epsom hospital every time he needs a full transfusion or platelets. It’s far from satisfactory but I guess we’ve become so blasé about transfusions over the last few years that we’ve forgotten that it’s still a big deal for many hospitals and wards. Josh wakes up for a CT scan of his abdomen which is done in the basement. He welcomes the cold corridors down there to begin with as he’s been feeling quite warm today, but is soon begging me for the blanket he told me not to bring. Luckily I brought it anyway. He goes straight back to sleep as soon as he’s in bed and doesn’t wake up until 7pm. Phineas and Ferb are on Disney XD and he watches several back-to-back episodes before complaining about a sharp, fleeting pain in his good eye. Given that a possible cause of Pancreatitis is the VZV virus which destroyed his right retina I call the doctor immediately, suspecting it’s nothing but concerned nevertheless. He doesn’t even look at it as there’s no point but says he will speak with Ophthalmology immediately. I explain that there will nobody there until Monday and that he’ll need to talk to Moorfield Hospital about sending somebody over on Saturday and he vows to do this. Josh doesn’t have any more problems and goes back to sleep around 9pm. He has a very unsettled night as we try to keep on top of his tummy pain which comes and goes all night, in spite of constant pain relief.
Saturday 22nd January
Having told Josh last night that he needs to be up early enough to change his fantasy league football team, I start the day with an 8am trawl round all the local newsagents looking for a copy of Match magazine containing the password. Josh is through to the 5th Round of the knockout cup and can’t strengthen his team without it. I fail miserably. One newsagent actually followed me down the street waving a Match of the Day Magazine in the air triumphantly which was no use whatsoever, then got shirty with me when I didn’t buy it. I’ll miss London when we move to leafy Surrey. The idea of a 20 minute hike to a village that only really has a butcher and a baker(not even a candlestick-maker)on its high street is filling me with dread already. Returning to the ward, there’s a note from the night nurse saying one of Josh’s orals is such an unusually high dose that she’s questioned it rather than just left it for me to give. It’s always nice to see people taking every aspect of their job seriously in this day and age. As it turns out, there’s a good reason for the higher dose and a doctor comes in soon afterwards to explain what it is. This is how things should work. I promised I’d return to the pain relief saga when I had time, and with Josh still asleep I may as well do it now. The responsibility for pushing the button to release the medicine rests with either the nurses or the patient but never with the parents because a number of parents in the past have pressed the button all the time to keep their child over sedated and out of their hair. Even though there’s a lockout on the system, so a minimum time between doses can be set, I’m still not allowed anywhere near it. All this is fair enough except there nothing to physically prevent me from pressing it if I wanted to, so it’s yet another nonsense ruling that just means more work for the nurses. Now that Josh is more settled and able to take control, we arrange for him to be put in sole charge of the all-important button rather than having to wait for a nurse to be free. Why, oh why, does life have to be so complicated ? The day seems to last forever as there’s so little happening. Josh wants to sleep and needs the curtains drawn so I have no idea whether it’s dark or light, cloudy or sunny outside until I eventually sneak out for lunch around 3pm. I find a noodle bar and enjoy 30 minutes of chicken satay followed by Udon noodles while I read the paper and sip a coke. Bliss ! Josh is still asleep when I return but wakes up for ward round which today features a guest appearance by one of the top consultants. He feels there’s no need for an ophthalmologist to look at his eye given that there’s been no recurrence of the shooting pain and he’s on Acyclovir. Let’s hope he’s right. A few hours later I nip to the loo and return to find one of the senior nurses encouraging Josh to drink more to get his fluids up. This is the complete opposite of what you should do when someone has Pancreatitis as it inflames their pancreas. When she questions the doctor who requested it she’s given an answer so vague it’s a joke. So little attention is given to his fluid balance during the day, despite us keeping minute-by-minute records, then there’s always a last minute panic around 5pm resulting in him being either overloaded with fluids or flushed with diarretics – both of which have devastating effects on Josh’s weight, blood pressure and hearing. It’s shameful and several of the nurses here are equally appalled. Claire calls to see how our day’s been and we decide that if Josh isn’t feeling any better tomorrow, I’ll do another night here as there’s little point in Joseph coming over. I put this to Josh the next time he’s fully awake and he reluctantly agrees. He rallies briefly to rearrange his online zoo and start breeding exotic fish in his aquarium then goes straight back to sleep, Looking at the day’s football results it’s just as well he didn’t change his team as I reckon he’s through to the next round. The knock out cup started with over 120,000 teams and there are just 2,000 left now. Wouldn’t it be fantastic if he won it ?
Sunday 23rd January
Very little sleep for Josh last night and none whatsoever for me. Putting him in charge of his own pain relief proved just as flawed as letting the nurses do it as he dutifully lies there waiting for the button to light up so he can press it again when he’s in pain, but can’t press it at all when it starts building and he’s asleep. I was up and down so often during the night that I became completely entangled in my grey woven hospital blanket and ended up looking like Spiderman had captured me. It’s the fifth night in a row that I’ve had virtually no sleep and it’s beginning to take its toll. At one point I scrawled my own name on one of Josh’s wee bottles and left it in the sluice room. Luckily I managed to scrub it out before any of the nurses spotted it and emptied it over my head in disgust. Quite how we deal with Josh’s pain I have no idea and neither does the pain specialist that comes up at 8am. She’s concerned about upping the background and we can’t increase the dose, so we opt for letting him deliver it more often. After much tummy rubbing and button pushing, he finally settles down for an hour or so. Having agreed with Claire that I’ll do tonight, I suddenly get a text to say she’s on the way with Joseph as she needs to be back home by Tuesday which would mean I’d only get one night of peace. Given that I’ve got a job on, it’s probably the best plan. After a couple of vomits, miracle of miracles, Josh starts to feel better and is sitting up when they walk in. He and Joseph play for a little while before Claire takes Joseph for lunch and then for an hour after they come back. They’re in the middle of a game when Josh’s pain returns and he asks for his bed to be lowered back down so he can have a rest. Joseph and I drive home listening to a very funny story on CD called 'You’re a Bad Man, Mr Gum !’ - a darkly humorous tale reminiscent of Roald Dahl that had Joseph laughing out loud for over 13 miles. We have just enough time to play Marvel Superheroes and read his new school book before we eat and I tuck him up in bed. Claire managed to keep Josh awake for an hour or so after we left, but after a couple of episodes of Got to Dance he was zonked. Hopefully watching all that dancing will have tired him out and he’ll have a more peaceful night...
Monday 24th January
After 6 hours sleep, probably more than I managed in total last week, I wake up feeling refreshed. It doesn’t last long unfortunately and after dropping Joseph and a friend at school, I drop off to sleep at my laptop. It’s gone midday before I stir and that was only because the phone rang. By the time I’ve got my head around the brief, it’s time to pick Joseph up. The lollipop man says ‘ GoodnIght sweetie,’ as we walk past, hopefully to Joseph but you can never be sure when a man’s called ‘Skip’. Quite why he’s called that, I have no idea. He looks a little like Captain Birdseye so maybe it’s short for ‘Skipper’ or maybe he’s just light on his feet and likes skipping across the road. Someone reading this blog must know – please tell me ! Josh had a much better day, although he was very emotional just before bed. He’s much slower neurologically at the moment, struggling to tell his teacher what 5 x 5 is, or even break a number down into tens and units. Hopefully it’s down to the Fentanyl rather than anything more serious but it’s impossible to say at the moment. Just for the record, here’s a list of side effects for Fentanyl. Headache, mood changes, nervousness, depression, confusion, memory problems, hallucinations, weakness, dizziness, difficulty falling asleep or staying asleep, uncontrollable shaking, pain, burning, tingling, or numbness in the hands or feet, dry mouth, hiccups, stomach pain, indigestion, gas. Diarrhea, constipation, nausea, vomiting, loss of appetite, back pain, difficulty urinating, itching, skin irritation, sweating, fast heartbeat, chest pain, seizure and coughing up blood. He’s probably on at least 20 other drugs at the moment, many of which have longer lists of far more serious side-effects. He had another heart echo today and the doctors found mild to moderate levels of fluid surrounding it. Whether that’s more or less than previously, nobody seems to know. His joints are giving him grief at the moment too, possibly due to high levels of potassium. His feet have swollen up again and his platelets and lymphocytes have dropped dramatically, other than that he’s fine. Our next Tadworth meeting is on Wednesday and there are already a whole host of new questions for them that have been thrown up by his Pancreatitis. Whether we’ll still be transferred there next week probably depends on what the answers are…
